Abigail's Medical Fund

As many of you know, Abigail has been sick since she was 7 years old. Abigail started out with Juvenile Rheumatoid Arthritis.  It was quickly change to Juvenile Psoriatic Arthritis. After a few medically intense years Relapsing Polychondritis (A cartilage disease) was added. Abigail developed a Subglottic Stenosis, deteriorating cartilage in her nose and her ears were affected. A few years after that Abigail tested positive for Kidney disease. She is currently in stage 3 kidney failure.  At stage 5 she will be on dialysis and on a transplant list. When she test positive for the kidney disease her diagnosis changed to Wegener’s Granulomatosis. This disease encompassed all the other things wrong with Abigail. She's showed all the secondary symptoms of Wegener's before either of the primary issues (kidney failure and bleeding lungs) showed up. Luckily it hasn't progressed into her lungs yet. She had been stable for a few years. In January of 2015 Abby had a port placement due to deteriorating veins. It was near impossible to put an IV in her and keep it functioning for any length of time. This past summer Abigail got really sick and they did a Lumbar Puncture (LP) to test for meningitis.  That LP didn’t go very well. She needed a blood patch to seal the puncture because it didn’t close on its own. This LP lead to a six month headache and the diagnosis of a pseudo tumor cerebral.   The headaches seemed to get better around January of 2016. Abby had her port replaced in March 2016 due to malfunctioning.  Shortly after the port was replaced Abby started having pain in her neck and she couldn’t move her head. After an ultrasound of her neck we found out that she has a clot. It formed around the catheter and up her neck to the back of her skull.  So she has had a few good months.  Abigail is now on approximately 16 different medications and is allergic to 9.

Recently Abby was hospitalized for the headache pain again. The doctors could not find anything that she can take to help relieve any of the headaches. They sent her home trying to increase the dosage of one medication. This has not helped.  On April 6th 2016 she was admitted into Children’s Hospital of Michigan (Where she always goes) with severe abdominal pain and her headache.  We saw Gastrointestinal, ENT, Nephrology, Rheumatology, Pain service and nothing they tried helped. Since she is allergic to so many medications most of them pain and antibiotic it is hard to find something to help with the pain.  After being in the hospital for 6 days they decided there was nothing more they could do for her so they sent her home in the same pain that she went in for. 

Her Rheumatologist who has been with her for almost 10 years said he had nothing more to offer her. He suggested we take her to Cincinnati Children’s Hospital. He said this is the best place for her with everything that is going on. We are currently setting up appointments with the different specialist in Ohio. We will take her records and see if they can find something to give her some relief.

I have already called Ed’s amazing insurance and they WILL cover Abby’s doctors and testing. We are blessed there. Ed, Abigail and I will have to travel from Michigan to Ohio. We will need to find a place to stay while we are seeing the specialists and testing, we are hoping the Ronald Mc Donald house can help with that but there is still a small charge for using their facility. We will need to cover food, gas and any other expenses that come up. Depending on how long we will have to be in Ohio and how many time we will have to return this could be very expensive. I don’t normally ask for more than prayers and good thoughts but today I asking for help to send Abigail to the Cincinnati Children’s Hospital.